Throughout our lives we hear about Quality of Life, as it is something people believe in and rely on, but which for the most part remains intangible and unthought of for people who are not at that moment facing the realities of dying. For people who have endured or are facing those realities through trauma, sickness, or disease it becomes an acutely more tangible concept at the exact moment it becomes far more elusive. And, these people also get to have the realization that Quality of Life is not fixed, but exists on a highly complex sliding scale. Its balance is like mercury, constantly shifting. Where maybe once Quality of Life may have included the occasional vacation, dinner party, love and family or even a pretty pair of shoes, it can suddenly shift and becomes solely about good days and bad days. Where sometimes Quality of Life isn't even divided by days, but the hours within them. If you have faced a true trauma, yourself or with someone, you know of which I speak. This is existing in the Quality of Strife.
For me, I had brain surgery to treat twin aneurysms, which in itself should have been enough, but got the bonus of some nerve damage from that. Luckily, the car accident which resulted in the discovery of (or caused the existence of, depending on the doctor you ask) my aneurysms also gave me whiplash, so my nerve damage has muscular damage to play with. Not to be shown up though, my severe anemia likes to remind the other two there is a third player on the field with chronic limb fatigue, pica, and award winning muscle spasms. So my quality of life resides in the whims and activities of my triplets: Head, neck, legs.
On a good day, my pain is constant, a dull ache from all sources, but a sharp ache from only one. On a worse day, one ache pulses under the stabs of two other culprits (while the underlying pain stays the same, but pounds pushing from opposite directions.) And on the darkest days, there is nothing but being bound in a shroud of agony. These Trifecta days are beyond description. They are a game changer and life altering soul destroyer. There is no me in them. Only the pain exists beyond all thought and cries. A contortionist trapped in all the levels of Dante's Inferno converging at once. Relentless. There is no life in those days, only begging the heavens for relief through death.
It is a hard place to be. A heavy burden to share. Living in that kind of pain. Not only because of the actual pain, or the fear of the possibility of that pain stretching out over the remainder of your life, but because you fought so damn hard to still be here. How can a person fight, with everything they've got, to live only to pray for death? It might seem unimaginable, but it isn't if you have known the agony of your whole body betraying you in a ferocious attack.
There is no way to make it pretty. No way to be honest without this truth. No way to survive the pain without admitting some moments you want to die. Pain Prayers of just wanting the hurt to stop at any cost. It is exhausting. Paralyzing. Hopeless.
Maybe the key to finding Quality of Life amid the Quality of Strife is to lower the bar. Stop expecting so much from the idea of the Quality. Stop expecting so much of yourself. Throw out the guilt and shame of Pain Prayers. Forgive yourself. Relish the little victories, any breather is a celebration. Every single step a journey worth taking.
Your pajamas are snuggly? YAY! That warm tea soothes a throat rough from screaming? YAY! You managed a nap? You felt the sun on your face? A friend called to say hello and made you smile for a minute? You got out of bed today? YAY YAY YAY!
You survive. Be proud and thankful. Allow yourself to see these simple moments as great achievements and precious gifts, because they are.
You didn't fight to survive just for all the grand milestone moments. In the end, what you really fought for all was the little ones, because it is those little parts which truly make a life whole. It is the small quantities which add up to the quality of our lives.
Yes, today, I hurt. Today, I screamed. Today, I wanted the hurt to stop. But today, I survived. I continued to breathe. That is what I fought for. And, today, I won.
Think of one little thing in your life that gives you strength and share it with someone you love.
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